#1905 12-08-2003 01:55 PM | Joined: Jun 2003 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2003 Posts: 41 | Dear friends,
I'm sorry for being gone for such a long time. I appreciate the messages sent directly to me from various people letting me know I was missed and thought about.
Not really sure where to begin. I'll answer the question I'm asked over and over again by everyone I meet. "How are you feeling?" I am doing very well. My doctors are still pleased with my progress. The lead doctor continues to be amazed that my surgery was only 4 months ago. My neck is still hard, but the feeling has returned to most of it. I was having a little trouble hearing (sounded kinda hollow is the best way i can describe it) but that has returned to normal.
I do, however, think I returned to work too soon and I'm now still playing catch up to everything. The people in the parish have been great about asking after me and being patient with me. My bishop has even given me an adjunct priest as an assistant. LOL, so instead of cutting back I've tried to do more. I guess I figured that now the essentials are covered and with two of is we can start to do more then I was doing alone.
There are two things that I'm having trouble with. The first is that twice now I've tried to return to Tae Kwon Do classes. I haven't been able to. I still lack strength in my left arm (thats where they took the flap from to do the reconstruction of my tongue). I've been doing some minor exercises to try to rebuild the strength but it is going so slowly. And since I've been so inactive since the surgery my stamina isn't nearly what it used to be. Also with the weatehr turning cold and damp there are a few more aches and more stiffness then before but I expected that to happen.
I know what I need to do to deal with that. The other thing I am having trouble with isn't as easy to sort out. Outside of my immediate family and closest friends (and even they do it from time to time but not as much anymore) it seems people deal with me as if I'm fragile or about to fall over dead. I appreciate their concern and I recognize that they are honestly concerned. Its just that it seems that I'm not Fr. Mike to them any more. There was a time when people would only whisper the word cancer and it seems that that is the way people are responding to me. I've tried my best to be honest with them about how I am doing but I don't know how to respond to this.
One of the best things that happened over Thanksgiving dinner was this: We were all talking (ok we're Italian so we were talking loudly ;-) ) and at one point I had a little trouble and slurred a bit and stuttered through a word or two. My older brother teased me about it just like he would have before this mess started. I responded "hey, give me a break I've only had the new tongue for 4 months" We all laughed. With my family atleast I'm still me.
I guess thats part of the reason I've been away too long. I'm still me, nothing more or less. My struggle with SCC doesn't define who I am but many only see that part of me. I've missed being here though. There are too many good people here. And atleast here I know there are those who understand.
So as I told the people of my parish when I first returned: I'm alive, I can still speak (or in this case type ;-) ) so like it or not your stuck with me because I'm baaa aaack.
Peace,
Fr. Mike
Fr. Mike SCC on the base of tongue, right side. T2 N1 M0. July 25, 2003 partial (40%) glossectomy, forearm flap reconstruction, right side neck disection.
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#1906 12-08-2003 02:07 PM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jan 2003 Posts: 95 | Fr Mike
Great attitude . I wish everyone had it. It takes time and a lot of everyone noticing your strengths before people will change. It's also an ego boost to be a caretaker for someone who has always cared for them. Maybe they need extra points because they've screwed up some how. Just kidding. Whatever the reaction you appear to have kept your sense of humor and will rebound back.People ask me all the time hows your husband? The real answer is his attitude stinks, It's hell going home to Mr Negative. And many days I'd like to slap some sense in him . But I always say fine and hope people stop asking. Those 12 yrs of Catholic school many years ago taught me the answer people want to hear is usually better in the long run. I'd say keep the faith but I think you have more than enough for many of us. And Peace to you and yours Diane | | |
#1907 12-08-2003 08:09 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | So good to hear from you Fr. Mike!
How people react to these things is rather interesting as a study. In many respects a parish or congregation is a large extended family. I would think that some of those folks are really personally affected by your having cancer and then all that happens during treatments.
For me the folks around me started acting "normally" when I started doing normal things.
Mark
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1908 12-09-2003 04:21 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2003 Posts: 148 | Fr. Mike,
I am so glad to hear from you! I found after surgery that my friends treated me as if I were fragile, my family considered me cured, and I vacillated between the two. Seven months post op I find myself surprised now when my tongue doesn't cooperate. I still have a hard time pronouncing sixes and sevens but that is about it.
Take care of yourself, and welcome back.
Sincerely, Lisa
Lisa SCC of Tongue Stage 1 (T1,N0,M0) partial glossectomy,modified neck dissection 4/14/03
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#1909 12-09-2003 02:13 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Fr Mike Glad to see you're back! And doing well. Tae Kwon Do? Tried to get back into golf after my surgery, seems the shoulder where they took the graft, although still numb and relatively inop compared to nomal, didn't hurt my golf game any. It was that bad to begin with!! People at work still treat me as a fragile old man though, expecially the young ladies in my office and my driver. All insist on helping me on with my jacket and carrying my computer case, etc. Kind of makes one feel helpless, although I do still need help with the jacket. I figure I'm good for speaking about a couple thousand words a day, then turns to pretty much gibberish. Although some would argue that's not from the surgery, was that way before. Anyway, seems the best cure is to keep active. And you're certainly doing that!!. Take care Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#1910 12-09-2003 04:55 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Welcome back Father Mike,
I was worried when we didn't here from you for so long. I know we both went through the surgery and treatment at the same time. I hope you are doing as well as I am. I have to go now but I will email you when I have more time. Your Friend, Daniel
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#1911 12-09-2003 05:56 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Fr Mike, I, too, was terribly worried when you were gone so long. I'm so glad to hear you are doing well. Some people will probably always treat you a little differently, but I think that with a little time, most will get back to treating you normally. Rainbows & hugs, Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#1912 12-11-2003 08:29 AM | Anonymous Unregistered | Anonymous Unregistered | Fr. Mike,
Welcome back...as everyone says it takes time. Also, I have found that people will take their cue from you and your attitude. As time goes on and they adjust to your "new normal" they will forget there was anything different before.
It may just be too fresh right now and their concern is still high.
Again - welcome back. Dinah | | |
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